Too quick reduction or worth a try?

Hi, I too am new to PMR - I have had it since September and started pred (15mg) on November 19 - and I am sure you will soon get some expert opinions from some old hands (hello Elaine and Mrs O!) but that does seem a very fast reduction. I have started to reduce under my doctor's guidance - but he has recommended that I take 10mg just one day a week, 15mg for six days; then on the second week do two days at 10mg and the rest of the week at 15mg; third week, 3 days at 10mg and so on, until on the seventh week I am taking 10mg every day....

I was feeling really well on 15mg - 95% better I would say - and my CRP level had reduced - and it was on that basis that my doctor agreed I could start tapering off the steroids. But even on this very gradual reduction I can feel a bit of the stiffness coming back - so I am keeping an open mind about whether 10mg is going to work for me.

I should also add that I was very much against taking steroids, and thought my symptoms were maybe not so bad as others and that I could manage with just the occasional Ibuprofen, but looking back now on those early months I don't know how I managed. Steroids have been fantastic for me - and so far, touch wood, no side effects.

I am sure you will get very good advice here - and no doubt you'll soon know yourself whether your GP is pushing you too hard.

Dinah tnx for your reply!

I see your point - a lot of resting in the first month, I admit....

How much pain can one live with without increase the dose?

No side effects yet, but I fear that weight gain....and the moon face.

hi i am sure eilleen etc will be along to help ,but read the info on the other forums etc ,i am afraid the idea of fast reduction is a myth pmr does not work that way i started at 15mgs and i am now on 7mg 2 years later and i am considered to have made good progress , so be pepared for a long haul of slow steady reductions guided by your symptoms .pmr is an autoimmune condition that wil burn itself when ready steroids do not cure it only control the inflamation that causes the pain etc therefore there is no point in rushing to get off steroids all that will do is increase your symptoms and mean you will be increasing your dose to get your pain under control .many drs do not understand this condition therefore get yourself informed information and knowledge is power and control ,and you need to control this condition or it wil control you !!!please come back with you questions we have all been through the fears and anxieties you are experiancing and can help carolk

Hi Ewa!

I am male and from Sweden. I have gone through all stages and have been free from Prednisolone for four years.

My doctor told me to start on 20 mg and reduce by 2.5 mg every 3-4 weeks until I reached 10 mg. This went without problems for me. Then I slowed down to 1 mg every month but at 5 mg I stayed a year until I found out how I could go down by 0.5 mg every 1-2 months and drag out the period for going over to the low dose. For you, I think it is enough at the moment to know what to do during the first months. The most important thing according to my point of view is not to force the tapering to go too fast. Then you probably will have a flare and have to go back up and at the end you may take longer to get to zero. I also think that taking Prednisolone is better than going around with aches all the time. I hope you will follow the advice to take it easy. When I was diagnosed I also found out I had GCA (jättecellsartrit eller temporalartrit in Swedish). If you have bad aches you have to watch out that you don´t get GCA as it may get you blind on one or both eyes. For GCA you have to start on 50-60 mg but they made the mistake and put me on 20 mg - however, it all went well for me and I have been off Prednisolone for four years as I mentioned before. Good luck

Ewa

I'm shocked! That's a super fast reduction and definitely not to be recommended.

Once we develop PMR there is unfortunately no quick cure. A sufficient starting dose of steroids gets control of the inflammation and eases the painful symptoms, but it is not curing the PMR - at present there is no known cause and consequently no cure.

It is very worrying to read that your Dr wants you to be down on 5mgs of Pred after just a few weeks on the treatment. If you truly have PMR, then that can only lead to problems, and if you have a flare which necessitates increasing back to your starting dose or even higher, then that will eventually lead to you having a higher overall dose.

And it isn't just a question of "how much pain one can live with without increasing the dose" - the fact is that if you have uncontrolled inflammation lurking around in your body that can lead to many nasty conditions, including Giant Cell Arteritis which puts you at risk of loss of sight which Ragnar has mentioned above.

If, as you say, you "continue to manage on 10mgs", then if it were me I would consider staying on 10mgs for some months especially in view of the fact that you have reduced from your 20mg starting dose in just a few days.

I'm sorry if this sounds depresssing but we do get very concerned for people when we hear such stories. And by the way, rather than "forgive you for your clumsy language", I am in awe of how well you write in English! I could never do the same in Norwegian!!! :D

Hello Dinah

That routine for reducing is exactly the same as I did although at the much lower dose of 5mg and below - taken from a suggestion by RD Swede above (thank you Ragnar!)

However, if you continue to feel the stiffness coming back, then perhaps a smaller reduction alternating the 15 with 12.5 would be more successful.

Hello and tnx to all u nice people! Och hej og tack så mkt till dig, Ragnar

I think I will try to reduce from my 10 mg to 7,5 mg by the next 4 weeks, like 5+3,75, 10, 10, 5+3,75, 10, 10, 5+3,75, and so on till I hopefully reach 7,5. But I will also increase the dose if I get too much pain/stiffness again. My doc says that I should be able to rise my hands above my head and walk in stairs whithout pain, and my own goal is to put on socks without big problems.

As for what you say, MrsO, I understand what u mean, and it scares me a lot. I still hope that my early treatment will prevent me from the full uncontrolled inflammation? And my blood tests are normal, so may be I won't develope the illness totally?

I've read al lot on this and the other forums theese last days, and it tells me at least that there are very few that has no pain/stiffness at all. So I still think that a low dose of Pred and some pain is the best. My doc is not fully convinced that my condition is PMR, and neither am I, altough I can't possibly find no other explaination....

Finally, I admit that I am very confused, very scared, very depressed and very angry - I am 54 years old, and it feels sometimes as I will loose everything I appreciate in my life.

Ewa

"And my blood tests are normal, so may be I won't develop the illness totally?"

A small number of patients diagnosed with PMR never have any raised ESR or CRP markers of inflammation in their blood - I believe the number is something like 1 in 5 or 1 in 6 - so it is quite possible to have normal blood test results and still have PMR.

However, as you say that neither you nor your Dr are fully convinced that your condition is PMR, have you been tested for anything else, such as your Vitamin D levels or a hormone problem? Being deficient in Vit D can lead to similar symptoms as PMR; also someone did post not too long ago believing she might have PMR but was later found to have a hormone imbalance. Another person posted on this sight some years ago and was not responding to her steroid treatment following a diagnosis of PMR. Eventually she was diagnosed with Lymes Disease, caused by a tick bite, was treated with the relevant antibiotics and made a good recovery.

You're not alone in feeling confused, scared and depressed - we all empathise with those feelings and understand, but, if you do, in fact, have PMR, at least it is reassuring to know that with the right care and treatment, we have an illness from which we will recover - sufferers of many other conditions sadly do not have that reassurance.

I wish you well.

Hi Ewa - no need to apologise for your "clumsy language" - I am always amazed at the standard of English spoken by most Scandinavians. Given the number of typos I've made already this morning I note the steroid/PMR brain is having a resurgence! I hope I catch them all!

And hi Dinah!

First of all - Ewa, everyone else has already said most of what I would have said so I won't repeat it but why don't you (and/or your doctor) think what you have is PMR? The very quick relief in the symptoms at 20mg is very typical of PMR - steroids will reduce the pain in other illnesses that produce the same symptoms but rarely as fast. If that speedy result isn't achieved then another cause should be sought - and anyway a range of tests should be done to rule out other things right at the start. But neither fibromyalgia or hormone related menopausal polymyalgic syndrome respond to prednisolone.

"How much pain can one live with without increase the dose?

No side effects yet, but I fear that weight gain....and the moon face."

That isn' t the point - the point is to use steroids to avoid the risk of other very unpleasant and, in some cases risky, illnesses. The long term inflammation can develop into GCA which is accompanied by the risk of going blind and this is more likely to happen in a patient with untreated PMR. It is still possible anyway - and nothing deals with GCA except pred. General inflammatory states in the body also predispose you to certain types of cancer and also to a range of blood vessel diseases causing stroke and heart disease amongst others.

PMR isn't the disease - it is the name for the symptoms due to an underlying autoimmune disease, which is causing your immune system to attack your body by mistake. The pred hasn't cured it - it is allowing you to manage the symptoms with a minimum of pain and stiffness. If you take too low a dose of pred to do that you have the worst of both worlds - the potential for the side-effects with none of the benefits. If you reduce the dose of pred below the one that achieves that control - the symptoms will return. They will only go away once the underlying autoimmune disease has gone into remission, become inactive - that might be in 6 months, it might take 2 years or even more. Only 25% of patients with PMR are able to get off pred in less than 2 years - and they are more likely to experience a return of the symptoms at some later date.

For many people getting down to 10mg as you have done is possible - for many others it has taken much much longer and at much smaller steps. I was given pred with a similar dosing at the start - I was OK at 5mg then but was then taken off pred - and the symptoms were back and even worse within 48 hours. Since then it has been increasingly difficult to reduce the dose each time I have had a flare - and that wa always because of being persuaded to reduce too far. I have no elevated blood values - I never have done, the ESR has been about 5 plus or minus 2 the entire time whether I am doing well or not.

I have recently seen a scheme of reduction from a very active research group where they reduce quite quickly to 10mg - not quite as fast as you have done though - but they then keep the dose at 10mg for a YEAR before continuing the reduction below 10mg at the rate of 1mg a month. Other reduction schemes have a relapse rate of 60% (3 in 5 patients), with the one year of 10mg they find only 1 in 5 patients have a recurrence of symptoms requiring an increase in their pred dose.

If you reduce too fast or too far you will be back to square one - and have to increase your dose of pred to be able to live comfortably. In the end that results in you taking more pred overall and puts you more at risk of what you fear in terms of side effects. At 10mg you are on a relatively low dose. Your body produces a corticosteroid anyway at a level of about 8mg/day, when you take pred your body ceases to produce the same amount - and it is EXCESS pred that causes the side effects. 10mg shouldn't, in most people, cause too much trouble. You can take a hand in the weight gain by being very strict about what you eat - the chubby cheeks are a bit different but to me far preferable to being immobile and unable to do anything. It was that in the 5 years I had PMR symptoms prior to being put onto pred that led to most of my weight gain. Inactivity is a good way to put on weight!

None of us LIKES taking pred. But the alternative for many of us doesn't bear thinking about. I have had a reminder in the last 9 months or so about how awful it can be - I won't be throwing my pred tablets away despite being far more cuddly than I'd like.

Eileen

Dinah - I did think it at the time: I think reducing even at that rate from to 15 to 10 in one swoop is too fast. Take a stop at 13mg for a few weeks and make sure you feel fine before trying down further. I know people who take 7 weeks to reduce from the old dose to the old dose minus 1mg! I day of the new dose this week, 2 days next week and so on. So in 7 weeks you are at 14mg and start again on the trip to 13mg! And certainly going via 12.5mg with your scheme would be far far better. You need the coloured enteric coated tablets (5mg and 2.5mg) or a pill cutter so you can halve the 5mg plain white pred tablets to do that.

Eileen

U people are all very kind and supportive

First, I think my doctor suspect that I don't have PMR because she says it is very rare that blood test are normal, and that my symptoms are not heavy enough, which is also the reason way I think I may not have it.

And - do u mean that we are gong to have no pain at all? Because I have some pain, but I live a normal life, walk my dogs in the morning, work almost full time, do my shopping and so on....

MrsO - vitamine D is ok, no thic bites, and already been takling hormons for menopausal difficaulties for a couple of years. My symptoms are perfectly matching the PMR symptoms, except for the CRP/SR. But maybe not so strong as for the rest of u people here. And no swollen knees or ancles.

I feel a bit naggy - sorry Will try to cope with the state of PMR as time goes by... But I hate it.

Ewa

"First, I think my doctor suspect that I don't have PMR because she says it is very rare that blood test are normal"

As we've said previously, it is definitely NOT so rare - both Eileen and Nefret who post here are examples of people diagnosed with PMR who have never had raised markers of inflammation in their blood.

If you do continue as directed by your Dr to reduce from 10mgs to 5mgs within the next month after being on steroids for around 6 weeks only, then I sincerely hope you haven't got PMR!

Nothing would have been better to me!

Thinking of you Ewa, with fingers crossed - good luck!

MrsO is absolutely correct - about 1 in 5 patients who have the symptoms of PMR have no abnormal blood readings. The figure is very similar for patients with GCA - where the inflammation is much worse and more of a risk to the patient so missing it just because of a belief the blood values are always abnormal would be bad. If your doctor would like some references I'm sure I can find some!

Not everyone has the same symptoms - but absolutely typical are stiff shoulders (so you find it difficult to even brush your hair) and hips, aching muscles and stiffness in the morning that lasts for more than an hour plus a few other things but I'd have to check before writing them down. Swollen knees and ankles aren't always found. I had PMR for over 5 years at a level where I managed with the occasional pain killer when it got too bad and going to the gym every morning for an aqua aerobics class which made me able to move and the more you move the less stiff you are that day. I eventually suddenly developed severe symptoms that left me almost unable to get out of bed, I could hardly move and turning over in bed was a planned ahead action. I could only get upstairs on hands and knees. So being not too bad now doesn't mean you will remain not too bad.

Like MrsO - if you are going to continue to reduce at that rate I hope it isn't PMR but something else. And believe me Ewa - we all hate it. Many of us have lost a large chunk of our lives because of it, either because it took a long time to diagnose - MrsO even ended up in a wheelchair for a while - or because we have had to rearrange our plans for life.

Good luck with any further reduction - and if you want any advice about other ways to make the discomfort less unpleasant come back and ask. Many many people have similar experiences with doctors who haven't done the right reading and have the wrong information or ideas about PMR. Both this forum and another one associated with a support group based in the northeast of England and with a website are working hard to educate patients and doctors - and the support group I mentioned there has a website with a lot of medical info all checked by doctors. You can also download the guidelines from the British Association of Rheumatologists for the diagnosis and treatment of PMR which may be useful to your doctor. Google "pmr and gca northeast support group" to get a link (it should be the first result of the search) or go to the pinned post at the top of the list of threads under polymyalgia rheumatica where you will find a direct link to the website. If I put it here the post will disappear for a while - the Moderator often adds it for us because he is very nice and helpful.

Eileen